On Having Chemo AND Being in "Remission"

Theoretically I am still in remission. That is what all the tests say. I have no tumour markers in my blood work nor has any cancer come up in my recent PET and CT scans. Yet, we know for a fact the cancer has returned.  How did this come to light? Let me explain.

When I was first diagnosed with breast cancer in 2005 it was discovered it was HIGHLY estrogen receptor positive meaning that the estrogen in my body was fueling the cancer's growth. This is not unusual and there are drugs used to remove estrogen from the body. I was put on Tamoxifen for this reason and eventually started receiving monthly Zoladex injections which turned off my ovaries completely. Theoretically that should have kept my cancer at bay.

After a few years of these monthly Zoladex injections I asked my oncologist if having my ovaries removed was not a simpler option. She agreed that since it didn't seem likely that I could ever stop taking the medication and that I was having some undesirable side-effects that might be resolved from a simple oophorectomy, going that route was a reasonable choice.

So on August 18th, 2011 I had elective surgery to yank my lady egg sacs. I woke up from the procedure feeling surprisingly good and was chatting with my mom when my surgeon arrived at my bedside. She looked like she was about to cry and told me that once she had entered my abdominal cavity she found small white cancerous deposits all over the place. Most of them were under 3 mm which would make them invisible on a scan but she had removed a couple larger ones for testing. She went on to tell me that I would likely need more chemo.

I'm not sure why but I was not particularly shocked or even that upset. Maybe it is because once you've heard a cancer diagnosis it is always in the back of your mind it will come back and you will hear it again.  Even being declared cancer-free you are never really free of the memories or thoughts of it returning. You are certainly not free of the scars and even side-effects of your treatment. Cancer never entirely leaves you after you've had it.

I remember feeling sad for the doctor that she was so upset telling me this news and I patted her arm and told her it would be okay.

She went on to tell me that while these cancerous spots were all over my peritoneum the rest of my organs, including my ovaries, looked fine. This was not entirely true as when the test results came back it turned out my ovaries were "completely" cancerous and that 1.5 cm biopsy of my bowel came back cancerous as well. One thing I knew from the start is that my type of breast cancer, lobular carcinoma, can be sneaky. It doesn't produce actual tumours but simply infiltrates the tissue, symptomless and invisible, much of the time. I've never had tumour markers in my blood tests. All my biopsies have looked perfectly fine to the human eye but have turned out to be very cancerous. Needless to say my oncologists' calming reassurances of my remission status hasn't meant a whole lot to me over the years.

This type of cancer diagnosis is called an incidental finding. If I had not had this surgery I would have never known the cancer had metastasized. So I am lucky. Not the lottery winning type of lucky but the type who finds out her previously thought cancer in remission was not so remissiony after all and gets to have chemo sooner instead of finding out once it had spread to bones, brain, etc kind of lucky!  WOo!

My oncologists were happy to take a wait-and-see approach for treatment but since I have the sneaky kind of cancer I wasn't that confident conventional testing would identify when things might be getting out of hand. I chose to act aggressively and do chemo right away. Sorta.

I decided to finish my semester at school and managed to do that while recovering from surgery, undergoing tonnes of tests and seeing lots of doctors. My attendance record wasn't pretty and my focus and concentration really sucked but with the help of some very understanding instructors I passed my fall semester with fairly decent grades.

Then I went to Vegas for a week to spend time with a good friend, had Christmas with my family and started chemo in January.

So far it is MUCH less debilitating that my previous chemo regimen. Yet, I can't say I am having a blast either.

When cancer goes rogue like mine has it is likely to be a long-term chronic condition; a disease you can live with, sometimes for many years. The hope is to keep you alive long enough for a better treatment to come along. Only about 7% of people have their metastatic cancer go into full remission. However, I've been oddly lucky so far and my cancer has been weird and rare from the start so I don't see why I can't be part of that statistic.

The Silence of the Hamstrings

I’ve never been one for video games nor do I salivate over the latest technology. I can’t say I’m afraid of it but have more of a certain distrust of The Hype and a desire to keep life pretty simple. I also don’t have a lot of disposable income. So the other day I noticed Dooce was giving away some Wii Fit sets and I immediately started to covet. Sadly being a Canadian resident I am not eligible for the contest. However, I suddenly decided that I desperately neeeeeed one of these things. Admittedly I’ve never tried one. I’ve never actually seen one in the shiny and plastic-y flesh. But for some reason I am absolutely convinced that this, THIS contraption is the key to my physical fitness reform.

I have a long and sordid affair with exercise that has left me wary as well as emotionally and physically beaten. It all started when I was born. I don’t have any other reason why I was never really adventurous physically or competitive on any level other than it has got to be missing from my DNA. Kids in the playground would run around screaming their fool heads off swinging on monkey bars and flinging their bodies in all sorts of dangerous ways and I was the one sitting off to the side with a book. As a child I was cautious and always afraid to get hurt. Perhaps it was that I was very small and not very strong. Or maybe it was that I was a city kid who wasn’t exposed to the great outdoors a lot. In any case I was, from an early age, an obvious target for ridicule and torment by ‘regular’ kids.

When I was 10 years old we moved from the city centre into a suburb and the new school had a very different type of Phys Ed curriculum. Specifically it was much more competitive, team based and not at all user friendly for geeky little wimps like me. Very soon I found myself caught up in a nightmare of bullying-verbal, physical and even, frankly, sexual from my classmates. It certainly didn’t help that my PE teacher laughed at my expense frequently and quickly nicknamed me ‘Useless’ in front of my peers. It got so bad that my younger brother soon was identified by this teacher as ‘Useless’s Brother’ and eventually transferred into a completely different school as following in the footsteps of my academic reputation was too unbearable to contemplate.

Some highlights of my PE classes were team captains arguing over who would NOT get to have me on their team. I also was kicked in the face causing my front tooth to crack and called a wuss when I asked to go to the school nurse. Good times. I could go on an on but I fear, should I do so, I may eventually find myself in the corner of my closet weeping and viciously stabbing my lone dusty pair of running shoes.

Later I was diagnosed with asthma which explained why my stamina wasn’t so hot but it didn’t take long before I was dreading PE to the point of other physical symptoms. Once at the doctor office I begged to be excused from PE class due to some small ailment. The doc sensed my desperation and asked me some pointed questions. I explained everything with tears rolling down my face and he wrote me a note excusing me from PE for the rest of my school life. And then the angels sang and the weight of the entire 6^th grade co-ed second period PE class was lifted from my shoulders. Literally.

A year or so went by and I joined a friendly neighbourhood girls softball team with much encouragement from my friends (AKA: peer pressure) and assurances (from my deluded parents) that it was all about having fun and it is not whether you win or lose but…say it now, people…how you play the game. I hated it and I totally sucked at it but I tried to be a good sport and did my very best, which was, obviously, not very good at all. Then one day I overheard the coaches talking about how they thought our team was ahead enough to put me on the field. I was so crushed and embarrassed and learned that for most obsessively competitive folk sportsmanship was a load of bullshit and even pot-bellied middle-aged coaches of girls softball teams only cared about winning.

So now I am an adult and as much I know that all that happened in the past is over and the bullies were a bunch of ass-wipes who are now probably meth addicts or in jail I STILL dread any kind of sports or exercise. I dread it, dread it, DREEEEEEAAAD EEEEET! I become paralyzed and absolutely refuse to participate in any kind of organized sports and fall into a shame spiral at the thought of working out.

I’ve tried all sorts of fitness regiments and I either hate it, can’t afford it, or I hurt myself. Damaged rotator cuffs and shin splints. I think I even broke my axel once. Pinched nerves and pulled muscles. $25 individual yoga classes which make you sweat. Crowded and smelly gyms where it is more about getting picked-up than getting fit. Driving in traffic and costly parking fees for specialty fitness centres catering to us gals who are chunky and just really want to be left alone when we copiously sweat while doing puny exercises with eeensy teensy weights. All of it = FAIL!

I get discouraged easily and bored almost immediately. And being prone to panic attacks in crowded and noisy places doesn’t help. But I have to GET OFF MY ASS! Some way, somehow. I’m putting on weight, I have arthritis in my foot and my right upper body is so stiff and sore from all my breast re-construction surgery even getting started on anything is daunting. I can’t even say I am out of shape as that would imply I once was fit. It feels like a lose/lose situation and I am not talking about the saddlebags below my hips.

But what? WHAT? What is out there for me that isn’t too hard, too expensive or too humiliating in some way?

And that is where the Wii Fit comes in. Yes, it is more than I can afford but it is certainly cheaper than a year’s gym membership. Bowling, boxing, tennis and yoga…interactive style! All sorts of fun stuff that I couldn’t and wouldn’t normally do right at my fingertips along with goals to set and achieve. My own little white cubic fitness instructor! It sounds like it just might work. Is this Wii Fit thing the way to go for a fitness-phobe like me?

An Update: In Case You Were Wondering

So Yoshi seems to have bounced back from her tummy bug and is almost back to eating normal amounts. Sadly, my paper towel supply is sorely depleted and my carpet will never be the same again. Thanks for all your get well wishes.

You may have noticed that I twittered that I was off to the cancer clinic for an appointment. I am still going every 3 months for check-ups and so far they seem very happy with my progress. I found out something interesting as far as how they calculate survivorship, though. I’ve been counting my cancer-free status since I got the all-clear pathology test after my mastectomy in Feb. 2006. It turns out they start your cancer free countdown from your very first cancer positive biopsy test. Makes no sense to me but that is how they roll in Cancerland. So according to them I’ve actually been cancer-free (or whatever they call it) for 3 years. I thought it was 2 years next week. Hmmmm…3 years works for me!

Anyway, I think I posted a TMI list a few weeks back stating that Christmas not only brought me yummy food and great gifts but also a very grinchy bowel. I’m still trying to inspire, um, generosity in that area so I’ve been scheduled for a CT scan in a few weeks to check out all those important bits in my tummy. Nobody expects nastiness there (my blood tests came back normal) but once you’ve had cancer these everyday aches and pains cause worry and stress and, very rarely, might mean something more serious. So I have that to look forward to. It means a very early morning, large amounts of water to consume and a lot of waiting around. Well worth the peace of mind.

And thanks for all your good luck wishes to me too. Yoshi and I are so lucky to have you.

Booby Update With Knocker McHooterson

I haven’t bored you all lately with whinging and gory details about my tits. I plan to remedy that right this second.

I went to my very cute plastic surgeon the other day and he said we are all good to go with Operation (literally) Nipple. My Barbie boobs are soon to be one step closer to the real deal. No date yet but probably near the end of summer. I don’t like to think about it much as it involves my skin and a sharp scalpel. I plan to be drunk for the procedure.

Something else that has been new for me is menopause. Yes, that is right. I am 38 years old and in menopause. Voluntarily I might add. My breast cacner is HIGHLY estrogen receptor positive which means estrogen will cause the cancer to grow. Of course being a younger gal I would have more estrogen coursing through my body than post menopausal chicks. One of the ways they deal with removing that estrogen from my body is through a drug called Tamoxifen. I take that every day and will have to for 5 years. With Tamoxifen your ovaries can produce as much estrogen juice as they want and the drug will remove it. An oversimplification but I am boring myself just typing this out. I hate to loose you all to a narcoleptic reaction. Anyway, another method to reduce estrogen is to turn off the ovaries completely. You can get them removed which some ladies do or you can get an injection (every month or 3 months) in your stomach that turns your ovaries off through your pituitary gland. Men who have prostate cancer can take the same drug to shut down their man bits too. Anyway, I decided to stalk and beat down all the estrogen in my body both ways so as of the beginning of the year I’ve been getting these injections every month.

Well…

I can say that menopause has some good points. No more monthly angst, mood swings or cramps. No more frantic trips to the drug store for FHP. That would be feminine hygiene products for you XY chromosome readers. So that part is alright. The bad part is that when a lady goes through menopause naturally it happens fairly slowly. The body eeeeases into it over time. With my injection I got slammed into it. In a matter of a couple of weeks. The result? Can you say hot flash? Summer heat has taken on a whole new level of discomfort. Holy fuck! I didn’t know a person could sweat so much without any exertion at all. I look like one of those Gatorade ads where the very toned and muscular athlete is chugging back a bottle of much needed fluid while rivulets of sweat course down their body after running a marathon. Well that would be me except that my body is flabby and slightly fat and I am sitting on the couch watching Miami Ink.

There are a few things I do to cope. And by cope I mean sit there complaining, flapping my hands at my face and armpits and wiping off my soaked brow on the cat. I drink lots of cool water. I fan myself with silly cutesy fans I buy from Chinatown. And I laugh. I have a theory that the laughing releases endorphins which in turn will make the feeling of my head bursting into flame vaguely pleasurable.

Now the logical thing to do would be to get some sort of remedy for hot flashes, right? Nope. You see those medications (even the natural ones) are filled with either natural or synthetic hormones and I can’t have those in my body again. It would be defeating the whole point of the injection and Tamoxifen. So I am stuck. And sticky.

I sleep (when I do sleep as menopause also causes insomnia) without sheets or blankets. The cat no longer snoozes with me as I inevitably toss and turn and boot her hot and furry ass off the bed. My underwear is damp along with the rest of my clothes both day and night. I smell.

You’d think producing that kind of heat would burn calories thereby causing weight loss. Oh no. It doesn’t. Not at all. Crap.

Hey! I am having a hot flash right now. They are worse at night. I don’t know why.

And the beauty of it all is that is that these injections are usually prescribed for only two years so I could return to normal when I stop and then have to re-go through menopause all over again when it happens permanently.

I am pretty sure if men got these things there would not only be a cure but it would involve a fairly sizeable Hot Flash Compensation Package.

FINALLY!! Pokey McSlowerson

Here it is! What you've been waiting for. A piccie of my post reconstruction hooties and post chemo hair grow-out. I am wearing pink to celebrate with Sharkey. Also because it makes me look hawt. Or maybe that is the hot flashes.

~Nipples Not Included~

A Small Gesture

I remember when I was going through cancer treatment all your comments, emails, care packages and phone calls meant so much to me. Feeling isolated is very common as well as feeling useless while you just wait for your treatment to do its thing in your body.

Recently I saw on another blog (which I cannot find again so if it was your blog give me a shout out so I can credit you) as well as on my local news station a story about a young boy, Shane Bernier, in Eastern Canada undergoing very difficult treatment for Leukemia. It is his 8th birthday on May 30th and he is trying to break the word record for the most greeting cards received.

The funny thing (funny odd not funny haha) is that a few years ago I worked on the film about the boy in England, Craig Shergold, who now holds the new Guinness World Record of 350 million cards while he was undergoing treatment for a brain tumour several years ago. It was called 'Miracle of the Cards'. Ah yes, the interconnectedness of all things.

So I ask you fabulous supportive people to, if you can, pop a card in the mail for this little guy.

Shane Bernier
PO Box 484
Lancaster, Ontario
K0C 1N0
Canada

Here is a video featuring the news story I saw.

You guys KICK ASS!

On a Roll

I have been very remiss in my blogging duties lately and each night I fully intend to sit down and write something highly interesting, intellectual and introspective but then suddenly see something shiny out of the corner of my eye and I thereby enter a trance-like state of sorts and forget all about my blogging intentions.

The fact is this; for some reason I am going through a highly Energetic Phase which is very unlike my normal Every Day Lethargic Phase for the last couple years. Between breast cancer, multiple treatments, 5 surgeries, horrific anxiety and my very own personal pity party I have been sitting on my ass watching a lot of TV lately and doing very little else. Why so hyper now? I am not sure if it is Springtime, my fabulous antidepressants kicking in or melamine poisoning in my Wheaties causing me to feel able to get vertical but I am not wasting this energy spike by trying to ascertain its cause.

Here is a list of what I have been up to the last couple weeks:

-completely cleared out my closet and all my drawers resulting in 3 black garbage bags of old clothes and stuff to be given to charity as well as a huge bag to be thrown away.

-drove all that stuff to the Salvation Army.

-multiple trips to IKEA for all those little bits I desperately need to make my house a home blah blah blah (totally falling for marketing hype).

-2 trips to the vet with dogs and cat (my friend’s animals which includes Lulu) for the dogs’ booster shots and tests for the cat who perhaps was fed tainted food. The cat is not poisoned but has urinary crystals. He also has a very bad case of the grumpies.

-2 trips each week to therapy plus a routine check-up at the Cancer Agency (everything is fine) as well as an appointment at my brain doc for happy meds. I also had a visit from my fabulously nice home care nurse (actually he is a murse [man nurse]) for my monthly injection to put me in menopause. That is a whole other post which I will get to another day when I am not having a hot flash. I also got my eyes tested. Still blind.

-plucked my eyebrows.

-went to Canadian Tire for compact fluorescent light bulbs (to do my bit for greenhouse gasses), bins for organising my storage locker, and fabulously cool new windshield wipers.

-repaired a chip in my bathtub as well a fixed caulking issues with precise wielding of razor blade.

-did my income tax return.

-organised my filing cabinet.

-vigorously brushed cat and then vacuumed for hours picking up all the mini Yoshi’s rolling around.

-recovered cat scratching post with new carpet.

-spent several hours going through all sorts of my stuff which was damaged by a water leak in the basement several months ago and put everything in plastic bins. Threw out 2 black garbage bags of moldy papers and photos.

-helped my folks clean on two different days.

-washed my car inside and out which took 3 hours. Went as far as to use Q-Tips for crevices. Also cleaned all the junk from my trunk and vacuumed there too.

-obsessively researched the prices of new eyeglasses online (see above blindness issues).

-watched the entire second season of Grey’s Anatomy on DVD. Now has unhealthy crush on Denny Duquette character.

-dumped out and washed all my spice jars. I am getting fresh contents so I am inspired to cook more.

-cleaned up and rewired nice lamp I found by the dumpster.

-attended a 3 hour course.

-bought two gifts in two different parts of town.

-did research for my business plan.

-cleaned my apartment in a very anal manner.

-completely disconnected my computer and all the peripherals and reconnected them in an obsessively tidy way including a revolting amount of zip ties.

-went on mini shopping trip at great store in crappy part of town. Got good deals but almost got mugged.

-read 6 books.

-polished my stainless steel cutlery.

-shopped online for Father’s Day and Christmas presents. I KNOW! Sick.

And tomorrow I am taking my car in for repairs, getting my hair coloured and washing all my floors. Then sometime over the next week I will be helping my mom make a new bed skirt, shopping for new eyeglasses, taking the dogs to the dog park, getting my clothing dryer fixed, researching materials for my business plan which means visiting distant warehouses, attending physio for my shoulder affected by my last reconstruction surgery, driving an hour to a nearby town to see my friend’s new puppy, going back to IKEA to exchange a lamp shade once they get new stock, making pillow covers, getting a pedicure and a bikini wax, buying some little replacement bits for my car and fixing my fax machine.

I cannot stop doing stuff.

It is kinda cool.

A Cancer Rant With No Real Point

I ran into my next door neighbour in the hallway last night and had a wee chat. She is always very interested in my health but in a way I find somewhat alarming. Like last night she asked how I was feeling. I said, “Really good, thanks.” To which she then asked, “No re-occurrence yet?” Yes, meaning she had indeed casually enquired as to whether my cancer had returned yet.

Fabulous!

My answer? “Nooooooo…well, not that we know of.”

I mean, jeeeeez...

I usually take most of these kind of interactions in stride because for the most part I believe folks who ask probing (albeit inappropriate) questions and offer unsolicited advice really mean well. I’d like to think that it just comes out wrong sometimes. Sometimes VERY wrong.

I’ve mentioned that I have an in-law who has dealt with breast cancer under vastly different circumstances than me who has in the past declared that as long as I have a positive attitude I will be just fine. I truly agree with the spirit of her statement but really LOATHE how simplistic and, frankly Pollyannaish it sounds. I’ve had relatives who have died of cancer who had fantastic attitudes. I’ve also heard stories of people who were convinced they were going to die from cancer and then totally recovered. Obviously keeping a positive attitude isn’t the whole story of cancer recovery. The fact is that, yes, having a positive attitude can help you get through the vast mountains of shit you have to go through with cancer treatment but feeling tip top all the time just isn’t possible and no one should ever feel guilty about having a bad day, or days for that matter. There are times when you are convinced you are going to die or you feel like you cannot take one more second of the physical and mental tolls. Days where you hate that you are dependant on others and that this stupid disease has not only royally fucked up your life, even temporarily, but has also affected the lives of those you love. Nobody facing a terminal cancer diagnosis should ever be made to feel that they were not positive enough to cure themselves. In fact I would say that (in my opinion) if I met someone who didn’t have a bad day or twenty going through treatment I’d be pretty sure there was some serious denial of some pretty heavy duty feelings going on. And I believe that is more dangerous than being true to yourself and how you feel.

Ok-so thankfully my neighbour didn’t get into the whole attitude thing this time around but she did get into what I call the Uninformed Shoulds. This is when people tell you what you SHOULD be doing spewing off info they heard from their aunt or from the internet or some other Oracle of Extreme Truth. Once again I know this comes from a good place and I appreciate the sentiments but it can be trying at times.

My neighbour asked me if I was going to return to work in the film industry as things were busy and there was work to be had. I said that I didn’t think I would be up to doing that job again in the future. I mentioned that 18 hours days were no longer appealing as well as the fact I have had so much surgery on my right side I couldn’t do the heavy duty lifting or driving required. I didn’t get into the fact that my reluctance to return to the film industry is actually more an unwillingness to devote 100% of my waking moments to dealing with insane costume designers, needy actors, miscellaneous crew and other so-called creative folks. Honestly after this whole cancer debacle I just want to do something I enjoy and that is fulfilling. Washing strangers’ underwear, hemming pants and sitting in some desolate parking lot watching the sun come up and freezing my ass off while the director yells, “CUT!” one…more…time…no longer inspires me. Call me greedy but I want more.

Anyway, my neighbour told me that I should go to the local Yuppie Uber Trendy Hellishly Expensive Health Food Grocery Store and have them set up a vitamin regimen for me to detoxify my body from all the cancer drugs. I just hmmm’ed at this because I talked to my doctor about this very same concept and she replied that I could do that if I wanted but that it would really only take time, a good diet and exercise to get my body back to where it once was. She said that we North Americans have some of the most expensive urine in the world with all the stuff we take under the guise of healthiness. So when people say I SHOULD go and drop hundreds of dollars that I don’t have on the advice of somebody who knows nothing about my health situation or history I don’t get mad. I just remind myself of this pertinent question. Who do I listen to? The hippy at the health food store or my medically trained oncologist who works at one of the most well respected cancer treatment centers in the world?

I know there are a lot of people out there that feel that the drug companies and the medical establishment are out to dupe us all and that curing cancer is simply a matter of cutting out sugar or juicing organic foods. I totally agree that when there is medical treatment for profit that maybe things get out of whack and priorities get skewed but in Canada things are different. Our medical treatment is covered by the government so there isn’t the profit angle that there is in the US. Drug costs are regulated. The majority of medical research up here is done by hospitals and universities. You’d think that if things were that simple somebody would have let the cat out of the bag in some socialist first world country like Canada or the UK or France. I am all for a good conspiracy and am probably more suspicious than the average guy but I wonder how many drug company CEO’s or medical establishment members would thwart revealing an existing cancer cure when chances are they or their spouse or their kids will get cancer. 1 in 3 people will get cancer in their lifetimes. It doesn’t make sense.

Obviously there a balance to be struck between alternative health practices and western medicine. There ARE naturopathic things that can be helpful in treating cancer that compliment modern technology and I believe the cancer agency I am treated at offers a good mix of both. Along with my chemotherapy and radiation I was offered therapeutic touch, shiatsu massage, acupressure, acupuncture, yoga, fitness counseling, nutritional counseling, medical marijuana pills, individual counseling, and other types of supportive care. What I was strictly forbidden to do was to take herbal supplements or vitamins while under treatment as they could have interacted with my chemotherapy causing negative symptoms and even decreased the effectiveness of my treatment. So those helpful folks who are friends, relatives or just work at the vitamin store could, in their ignorance, cause you serious harm.

*start foreboding music*

I have an interesting story to tell that happened to me before I was diagnosed with cancer and started my blog that illustrates this issue. I’ll post about it on Monday.

And my point? Maybe I’ll figure one out by Monday as well.